Well for all you delightful folks who have taken the time to read my goings on, thank you. While I started this as an outlet for myself, it's blown me away the support and kindness I've received from so many of you. I feel truly blessed.
Several have continued to ask me what the latest news in my MMMT (see blog title) is & I apologize for putting it off. Due to some "off" test results & a couple of others that needed to be done, I got to go back out to Seattle the week of Valentine's Day. The trip out was much less traumatic than the first time. It was kind of nice to be able to envision where I was going so that mystery was gone. WHEW!
After my trip in December, they found that I appear to have Central Hypothyroidism, so I was started on meds for that. A couple of weeks later it was thought that I may also be adrenally insufficient (one of the tests i had to have re-done this month) and started on steroids as well. So after the new test, they were able to rule out the adrenal insufficiency, which was nice to hear, which meant NO MORE STEROIDS!!! Now I continue on the thyroid meds alone. the other good thing about no more steroids, is that we can start up Cushings testing again!!
I also had to have an IGF-1 test done. Oh, that's growth hormone, btw. In December, my GH level was VEEEEERRRRRYYYY low. The lowest level on their reference range was a 115....mine was 46. the IGF-1 proved that I am, in fact, extremely growth hormone deficient. What does this mean? Oh, all sorts of fun, my friend!! I'm being started on growth hormone supplements, which we're hoping bring with it some positive results. The downside? It doesn't come in pill form. No, it's an injection. That I have to administer MYSELF. Any of you who know me really well, know that this isn't exactly up my alley (is it for anyone?). I heard from my patient care advisor today and everything has been approved and the nurse will be out to teach me how to do it most likely in the next week. The medical diagnosis that is accompanying this is "Pituitary Dwarfism" (anyone happen to find what I find particularly amusing in that? lmbo)
This brings me to the more difficult, personally, of what's going on. 6 yrs ago is when I started getting sick pretty consistently. It's when my falling episodes started and things just got sucky. It was at that time that I ended up in the ER one night because the dizziness had gotten so bad. They did a CT scan that ended up showing what's called an arachnoid cyst in my right parieto-occipital lobe. This started our tour of the neurological community, being bounced from one Neurologist or Neurosurgeon to another all with no success and lots of tears that followed in visit. The problem is that the majority of the Neuro community doesn't believe that A) arachnoid cysts don't cause any problems (total baloney!) and B) that everyone with one is born with it and most don't even know they're there. That's all well and good, but did I mention that mine was the size of a GOLF BALL?? True story. This past May, I was referred to a local Neurologist & we were requesting a new MRI because things just haven't gotten better and in many cases, things are worse. It was during this visit that I hit a very low point. As Iwas explaining my symptoms through my tears, I apologized for rambling & told him "After so many referrals and telling my story so many times, with SO many symptoms, you start to feel like a hypochondriac." He then looked at me stone faced and asked, "Well, is there any chance that you ARE a hypochondriac?" I about died. Plus, would an ACTUAL hypochondriac really admit if they were one? Ugh. He then refused to order a new MRI saying that he wasn't going to waste his time or my money. And we were done. Among my many many blessings that have come out of discovering my doctor in Seattle, was having a new MRI ordered on this last jaunt out. They new of my cyst & had my old films, but were specifically looking for a tumor on my pituitary. The good (ish) news is that they couldn't see anything on my pituitary. I have what they're calling "partially empty sella", the sella being the boney compartment-y area where the pituitary lies. Mine is kind of pushed off to the side, leaving a partially empty space in the sella. Anyway, back to what I was saying. Upon doing this new MRI, they did find something interesting, and not anything that has anything to do with what they were looking for. They presented it to the chief Neurologist in Seattle and my heart dropped when they called. The cyst had, in fact, grown...just like I had feared it had & like so many doctors said it wouldn't EVER grow. BITE ME!!! I WAS RIGHT!!! It has actually grown a full centimeter in all directions, so now it's bigger than a golf ball. lol You have to admit it's kinda funny. So, what does this mean? The Neurosurgeon out west has said that because it's grown so much, he believes it WILL continue to grow (I've waited 6 yrs to hear someone say that) that he wants me to get it taken care of. He says it isn't emergent, but that he'd like to see it done in the next 6 months at most. He says he'll gladly be my doctor for this, but he's in Seattle....not exactly down the road. He has, at our request, requested a surgeon of his calibar in the midwest & he gave us the name of a doctor at the Cleveland Clinic that he used to work with & specializes in issues of fluid on the brain (if I didn't say, an arachnoid cyst is a build up of cerebrospinal fluid). We're now just waiting for my doctor here in Murfreesboro to get the follow up notes from my doctor in Seattle so she can make the referral to the doctor in Cleveland. Doesn't it make your head spin??? Now, while it isn't a severe form of brain surgery, it will be brain surgery, all the same. Yes, I am scared. They'll do one of two things. They'll either put in a shunt (a tube to redirct the fluid from my brain to my abdomen) or they'll do a fenestration, where they drill one or two dime sized holes in my skull and drain it endoscopically or where they actually remove a small portion of skull bone to access the brain directly. Whichever one, you're typically discharged from the hospital 24 hrs after the surgery (barring any complications, of course). If we go with Seattle, I just wouldn't be able to FLY home for 72 hours following surgery. Lots to think about & weigh. My faith in God is helping through all of this overwhelming time and every time I pray for His calming presence, I feel it wash over me almost immediately. Never dismiss how great God is. I have great friends I've been able to talk about this with & without them I would truly go nuts. For my friends, thank you for being my friend, you mean more to me than you can possibly know. In the quiet moments the enormity of all off this catches up with me, I won't lie. I think Scott is a lot more scared then he'll ever ever say & I can't help but feel bad for "making" him go through all of this. I know it isn't my fault, but still. I just pray for the day when I see "that look" finally leave his eyes. I am just blessed that he loves me so much. It would be easy to throw in the towel in times like this for some, and it just strengthens us all the while.
Now, in the event that you, like my mother, question that I actually have a brain, I have PROOF!! HAHA! The cyst is impossible to miss, it's impressive, eh? lol
Thank you again for your prayers and support.
